Our family's journey through life

Parker House

by Amber

I copied this from Sophia's blog and I wanted to share this with my readers and to see if maybe we all can come together to help spread awareness and help other families who are having to face the CDH roller coaster ride.

Parker Reese Singletary was born May 7, 2006 and fought a hard battle against CDH for 20 hours. On January 1, 2008, Parker's Mommy and Daddy formed The Parker Reese Foundation in memory of their daughter to help other families affected by CDH.

In May of this year, some dear friends of the Singletary's very generously donated a house to The Parker Reese Foundation. Yes - a house! This house is appropriately named "Parker's House" in memory of sweet Parker. Parker's House is meant to be a "home away from home" for families with a CDH baby at Duke or UNC Chapel Hill that have come from far away. It's located 20 minutes between either hospital and CDH families may stay free of charge for just one night or for many months. What an unbelievable gift to these families during what is such a difficult time!!

Recently Parker's Mommy, Jessica, contacted me. The Singletary's are decorating Parker's House with photos of other CDH babies. She has been following Sofia's story and requested some photos of Sofia to display in Parker's House. I am so honored to know that Sofia's photos will be hanging on the walls in Parker's House, giving hope to other CDH families.

The Parker Reese Foundation and Parker's House are made possible by donations. Parker's House has a "Wish List" containing items needed to keep the house stocked for its very important guests. In fact, another CDH family I have been following will be moving in this month when their baby arrives. So these items will be helping them. Please consider donating something from the Wish List or making a monetary donation from The Parker Reese Foundation website. Monetary donations may be made securely through Paypal by clicking the Paypal link in the upper left hand corner of their website, or also by clicking here. I made my donation just now!

Posted by Kenny and Jennifer Miller at 2:07 AM

Physical Therapy and Weight Check

by Amber

Today Owain had a follow up with his physical therapist. The last time Owain was evaluated by his physical therapist was when he was two months old. At that time Owain was doing everything developmentally right on track. She didn't think that Owain needed to be seen until now. She was very pleased with his progress. She said that he has hit most of his six month mile stones. He is rolling over from front to back,back to front,he scoots all over the place. He can sit up all by himself (still a little wobblie and tends to loose his balance and fall over). She gave us some handouts of some exercises to do at home to help him gain more balance while sitting and to get him to go from sitting to laying down all by himself. The visit went very well considering it was Owain's nap time. He enjoyed playing with all the cool toys. Owain does not need to go back to physical therapy until he is ten months old. So in the mean time we will work on these exercises at home. Oh and another thing we need to work on his his upper body strength. When on his belly he tends to get tired easy and want to rest his head. I think maybe his head might be to heavy for him. LOL.He does wear twelve month hats and everything else he wears is three months to six months.

Here is a picture of Owain practicing sitting.

Trying to crawl...you can do it!

Therapist trying to get Owain to crawl.
As you can see he had other plans. Silly boy!

One thing that the Physical Therapist brought to our attention is that she read on Owain's discharge chart from Legacy Emmanuel is that he has T11 Hemiventebrae. From her professional opinion it doesn't' seem to be affecting him as of right now. It is something to keep a close eye on as he grows. I was a little frustrated when we heard of this as this was the first time it was brought to our attention. The Doctors at Legacy never brought this to our attention! How are we suppose to keep a close eye on something that no one even bothered to tell us? Don't get me wrong the Doctors at Legacy were amazing with Owain's care. Some how this was over looked and I plan on speaking with Dr.Zigman about it and we will learn more when Owain has his next xray at nine months. I also plan on getting a copy of all of his medical records.

After Physical Therapy we had Owain get his weight check. He now weighs 13lbs. 9.5oz he has put on a little bit of weight since his last weight check six weeks ago. At that time he weighed 12lbs. 7.5oz. He still is only in the one percentile as far as weight. The good news is he hasn't lost any weight since leaving the NICU. We plan on getting in contact with DR.H his pediatrician and re evaluating his feeding plan. We might have to up his calorie in take. Right now he is on a 25 cal with his formula. I am not to terrible concerned as long as he is on the curve and not loosing any weight I am ok with that.

Update on Baby Elliott

by Amber

Today Elliott is stable enough that the Doctors are going to put everything that is in her silo back where it belongs.Please keep the Reed family in your thoughts and prayers today while Elli has yet another surgery.

Elli keep staying strong! Your a true warrior princess!

ANother CDH baby needs our prayers!

by Amber

Another CDH baby need are prayers. Baby Ella is thirteen months old and she is having surgery today. Please keep Ella and her family in your thoughts and prayers today. Pray that she will remain stable through surgery and have a speedy recovery. To read up on Ella's story go here.

Thank You

Labot Day Weekend part 2

by Amber

At the park Owain got to swing in a big boy swing for the first time. Here he is trying to decide if this is fun or not?

Not really digging the swing

Later Owain got to swing with daddy and he decided that wasn't so bad.

More pictures to come.....

Labor Day Weekend Pictures part 1

by Amber

During our little vacation to Eugene we meet up with some of my girlfriends,their husbands and their two beautiful little girls. We had a great day at the park. It has been well over a year since we all have been able to get together. It was neat to see each other in our lives now that we all have settled down and have families.

To be continued.....

Home Sweet Home

by Amber

We've been home now for a couple of ours from our three day weekend adventure visiting with family and friends in Eugene,Oregon. We had a wonderful time but boy does it feel good to be home. I think Owain is really happy to be home too. The last half hour of our drive he was not to happy crying off and on. As soon as we got to our front door Owain went from unhappy crying baby to all smiles. He played for a little bit with some of his toys he has been missing,ate some yummy green beans,had a bottle and as I type this he is fast a sleep in his crib.

Home Sweet Home

We took a ton of pictures from our trip I would love to share but that will have to wait until tomorrow. I think I am going to call it a night and crash.Woohoo my own bed!

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